About generalized lipodystrophy (GL)
Generalized lipodystrophy (GL) is a disease in which people have little to no fat tissue all over the body.
GL is a rare disease, which means that only a small number of people are affected by it. For this reason, it can be difficult to diagnose.
Faces of GL: Stories of life before a GL diagnosis
People often asked why Dena and Raeya were so skinny or so muscular, but before they learned that they had GL, there were no answers. Play video to learn more.
Little to no fat all over the body—isn’t that a good thing?
In people with GL, having little to no fat tissue can affect the way they look. But there is more to not having fat than meets the eye. Our bodies also need fat tissue because it makes hormones. One of these hormones is called leptin, and it plays a very important role in the body.
Leptin is important because it helps control metabolic processes in the body. Some of these processes are
- helping to control how the body manages fat.
- helping the body respond to insulin. Insulin is a hormone produced by the pancreas that helps manage levels of sugar in the blood.
There are 2 types of GL: congenital GL and acquired GL
You may hear congenital GL referred to as Berardinelli-Seip syndrome and acquired GL referred to as Lawrence syndrome.
The table below outlines some differences between the 2 types. Regardless of type, everyone with GL has little to no fat all over their bodies, has little to no leptin.
| Congenital GL | Acquired GL |
|---|---|
| What does it mean? | |
| A congenital disease is one you are born with | An acquired disease is one that develops any time after birth |
| When signs/symptoms start | |
| At birth or soon after birth | In childhood or teenage years |
| Why GL develops | |
| Congenital GL develops because of a genetic mutation, or problem, with a gene | In some cases, acquired GL develops because of a problem with the body’s immune system. This is called an autoimmune disorder. In other cases, the exact cause of acquired GL is not known |
What makes GL even more complex is that there are differences within each type. There are at least 4 genes with mutations that cause congenital GL. Acquired GL is often associated with autoimmune disease. The cause and signs/symptoms of GL can be different in every person living with it.
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